Temple University School of Medicine Researchers to Help Build National Clinical Data Research Network with Funding from Patient-Centered Outcomes Research Institute

POSTED ON January 15, 2014

Researchers at Temple University School of Medicine (TUSM) have been awarded funding from the Patient-Centered Outcomes Research Institute (PCORI) to help establish a new national patient-centered clinical data research network known as PCORnet. The funding comes as part of an 18-month PCORI contract awarded to the P²aTH learning health system, a four-university consortium that includes Temple University School of Medicine, University of Pittsburgh at Pittsburgh, Penn State College of Medicine/Hershey Medical Center, and Johns Hopkins University/Johns Hopkins Health System and Johns Hopkins Health Care. P²aTH will contribute to the development of a Mid-Atlantic data network -- one of 29 such networks that were approved for a total of $93.5 million from PCORI on December 17 to form PCORnet. The P²aTH consortium will receive a total of $7 million, with $1.15 million directed to patient-centered, clinical-research infrastructure development at Temple Health.

“We're proud to have been selected,” said Anuradha Paranjape, MD, MPH, FACP, Professor of Medicine at Temple’s medical school and Chief of the Section of General Internal Medicine at Temple University Hospital. “The national network will, for the first time, create a clinical data system to cover the country, using existing data sources,” said Dr. Paranjape, who also serves as site investigator for Temple on the P²aTH PCORI contract.

Such a vast network will provide researchers nationwide with access to data on diverse populations, enabling them to study trends in procedures and disease incidence, for example. It will also allow researchers to focus on questions and outcomes that are relevant to patients, such as which treatments are preferred for a specific disease and why, and could prove valuable for the investigation of rare diseases, in which it often is difficult to identify patient populations that are large enough to obtain statistical significance. PCORnet is further expected to improve the speed and efficiency of patient-centered research and will require the involvement of patients and other stakeholders in the collection and use of data.

Over the next 18 months, Dr. Paranjape and colleagues, including Aaron A. Sorensen, Director of Informatics at TUSM, will use their P²aTH PCORI funds to build the necessary information technology infrastructure at Temple that will allow existing patient data stored in electronic health records (EHRs) to be incorporated into the Mid-Atlantic network. A major part of that process is standardizing EHR data, since different research partners in the network use different EHR software.

“The first step in the process will be to extract de-identified clinical data from Temple’s EHR so that it can be pooled with similar data from the other P²aTH EHRs,” Sorensen said. “The end goal is to create large repositories that will help investigators better understand health outcomes of diverse patient populations in the Mid-Atlantic suffering from idiopathic pulmonary fibrosis, atrial fibrillation, and obesity.”

To transform the data into a standard format, Sorenson's team plans to install i2b2 software at TUSM and then map EHR data to that software. In addition to that work, the Temple scientists are also expected to contribute to the development of policies that govern data sharing and security and protection of patient privacy for the national network and contribute to ensuring the interoperability of P²aTH with the other networks.

Dr. Paranjape and Sorensen will be working closely with the overall principal investigator for P²aTH, Rachel Hess, MD MS, Associate Professor of Medicine, Epidemiology, and Clinical and Translational Sciences at Pittsburgh.

The P²aTH consortium was selected for the PCORI contract following a review process in which patients, caregivers, and other stakeholders joined scientists to evaluate submitted proposals. Applications were assessed for the capacity of their network to collect complete, comprehensive clinical data, how well they will engage patients and other stakeholders, and their ability to maintain data security and patient privacy among other criteria.

All awards are approved pending completion of a business and programmatic review by PCORI staff and issuance of a formal award contract.

PCORI has awarded a total of $464.4 million since it began funding comparative effectiveness research (CER) in 2012. For more information about PCORI funding, visit http://pcori.org/funding-opportunities.